Saturday, June 22, 2013

A family physician from Israel spoke about being asked to counsel a couple considering terminating their fetus with Gaucher's disease Thursday at the international narrative medicine conference I'm attending in London.

What made this encounter unique was that Dr. Ruth Kannai from The Hebrew University of Jerusalem has Gaucher's disease herself. The condition causes an enlarged liver and spleen, skeletal disorders and bone pain.

Dr. Kannai was asked by a medical colleague to speak with the parents. She recounted how she began the phone call feeling "omnipotent" in her role as doctor and capable of separating the professional from the personal. But, she said, she was quickly flooded with unexpected childhood memories about her condition that left her feeling confused about her position.

Because the couple had already spoken to a geneticist and doctor, Dr. Kannai recognized that she represented the fetus, or patient. "You should really speak to my mother," she told them.

Dr. Kannai described her life as a doctor, wife and mother of four, focusing on her abilities and describing her childhood as happy and normal between hospitalizations.The woman on the phone asked her: "What do you do when the child has pain?" Dr. Kannai explained that as a child she took pain killers, rested and wore splints. But she said that at this point in the conversation she felt like a "failure. I felt my words were empty and hollow and I wondered how I had gotten myself into this mess."Only later did she realize she'd left out how difficult it was for her parents to work and support the family when she lay in the hospital for weeks; the resentment her sibling voiced about the attention she got; and the way her father cried when she was hospitalized.Co-presenter Einat Avrahami, a professor in the department of English at The Hebrew University, noted that the woman was concerned about her own suffering as a mother "deprived of the maternal ability to relieve pain in her child. The question of pain trumps most other issues" in prenatal genetic consultations, she said.Avrahami said this was "confusing the disability trait with the whole of a person's life."She also said that the conversation between Dr. Kannai and the parents ignored the social construct of disability, where "disability is situated in the individual and the solution for the problem is put in the hands of clinicians and it's the responsibility of the individual to overcome their impairment."Avrahami noted that when the question is framed as "whether a couple should terminate" as opposed to "whether they should continue the pregnancy" the question isn't neutral to begin with and "highlights the medical intervention of abortion."Dr. Kannai said she regretted speaking with the parents because she couldn't separate her role as doctor from that of patient. However, she said parents whose fetus has a prenatal diagnosis need access to real-life stories from families of children living with the disability, or to be able to speak directly with families, so that they can make an informed decision.When she learned the couple she had spoken with had aborted their fetus, she felt "angry. I hadn't succeeded in selling myself as successful enough or worthy of life."She wrote about the experience to try to better understand it. "Something important happened here, but I can't explain it with the tool kit I received at medical school."Dr. Kannai spoke about how as a sick child she wanted to become a doctor. "I was choosing sides. It's possible to be either a patient or a doctor, but never both. There is a struggle to leave illness outside the profession."She noted that student doctors are taught that their personal story will interfere with patient care and that it's paramount to remember that "the patient is the one with the disease."However, suffering is a universal human experience, she said. The reality is that patients and doctors have wounds. "If the doctor denies her wounds she may be unable to listen to her patient's cry for help." Dr. Kannai quoted psychiatrist Carl Jung: "Only a wounded doctor can treat effectively." She said that when doctors don't acknowledge their own wounds, they put themselves above their patients and can't have equal relationships.When I asked Dr. Kannai about whether it's ever appropriate to share a personal story about illness or disability, she said professional boundaries are there primarily to protect doctors. Sometimes providing the best care means breaking the rules. For example, she's had a hip replacement and when a patient considering the surgery asks her about her experience with the procedure, she shares it.Dr. Kannai later told her 12-year-old son about her conversation with the expectant couple and asked what he'd do if he found himself in that situation in future. Would he want to terminate?"Don't be silly!" he said.Dr. Kannai said she has found meaning in her experience with disability but recognizes that the search for meaning "is personal and non-transferable."She said that when she translates her patients' stories into "the language of suffering" required in a medical file "the real story is not told. When I'm offering objective information, I feel I'm faking it."

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